The Misperception of PFS

Continuing this discussion from here Sonic's raw food/juice/fasting to avoid derailing that thread.

Being immersed within the confines of this website, and having a basic grip on what has already been proven with regards to this disease, it has been both eye opening and alarming to venture outside of here on to other forums and youtube videos which discuss the topic of pfs. In addition to this, some recent posts from a few of the regular posters here questioning the veracity of muscle wastage claims and pondering if pfs is partly psychogenic have been bemusing to say the least. If you aren’t aware of some of the faulty claims and in some cases outright falsehoods being spread about pfs, have a look at this

Exhibit 1:

“The Truth About Propecia For Hair Loss | Dr. Niedbalski”

In this video, which has nearly 250,000 views, a hair transplant surgeon has this to say about post finasteride syndrome

“There have been patients that have lost, err, sexual function after taking propecia and then it didn’t come back after discontinuing that. These are likely patients that have had predisposing factors, err, for impotence and sexual dysfunction such as low testosterone, hypertension, diabetes… they start taking propecia and it really kind of pushes them over a cliff they were heading over anyway um, so when they stop the propecia they really never recover their full sexual function because, you know, they… again, they already have other reasons for that, it would’ve happened anyway regardless of whether propecia was in the picture or not.”

It is one thing to neutrally report the data from Merck’s studies and to state that, statistically, side effects appear to be rare. However, the statement above is a despicable lie. There is no data or study to support his assertion. He speaks as though persistent sexual side effects are a rudimentary mathematical equation: A healthy man is at 100; finasteride is -20; if a healthy man takes finasteride, he is at 80, and will not experience persistent side effects. A diabetic man is at 40; if he takes finasteride, he is at 20 and has persistent side effects. Junk pseudoscience from a hair transplant surgeon. The hair transplant industry depends upon finasteride; comments are, naturally, disabled for this video.

Exhibit 2:

Youtuber Kevin Mann has this to say on the subject of post finasteride syndrome:

"I would disregard all the bullshit anecdotal arguments that people are using on those, er, websites, a lot of them are financially motivated, they wanna… they’re, they’re pursuing lawsuits, in fact if you go to those websites like propecia help they actually have, err, lawyers advertising their website saying “let us help you sue merck” or “let us help you sue your pharmacist so you can get rich” so a lot of these people are just looking to make a quick buck, err, they’re deliberately exaggerating the side effects, err, there’s no mechanistic data whatsoever that shows that finasteride has any irreversible side effects… the side effects will go away if you stop using it… The idea that something is completely irreversible is just, err, is just completely fallacious."

"And another thing I’ll point out about the members of propecia help forum, if you look at these guys, these just some of like, the saddest most, err, pathetic bunch of incels you can ever imagine, we’re talking about people who have never stepped foot in the gym in their entire life, people who are either diabetic, prediabetic, a lot of these people have cardiovascular issues and all these health problems can contribute to erectile dysfunction, so, there’s a very good chance that these people already had like, issues with erectile dysfunction due to their health problems and, you know, it’s either that finasteride made it a little bit worse or, made them more conscientious of their problem cause of all the problems they’ve heard with it, and, it’s best just to ignore that bullshit and just take the finasteride like an aspirin and forget about it, because I’m a firm believer in the nocebo effect and the nocebo effect, for those who don’t know, is like the opposite of placebo, the idea that, if you really really think something negative is gonna happen then something negative will happen so it’s very important just to ignore that bullshit… it’s all just a bunch of bullshit and keep in mind that these people, as boisterous and vocal as they are, are in the extreme minority so, don’t take what they say seriously"

Difficult to know where to begin with such spiteful and unsubstantiated allegations. To date, to my knowledge, the most any patient has seen from a lawsuit is around $9000, and that was the result of a huge class action lawsuit that took years to resolve. For reference, recently, there was a case of a girl suing Starbucks because she spilt hot tea on her arm even though

She was carrying the coffee in her left hand, the cookie in her right and the tea between her elbow and ribs when the tea spilt on her. The complaint was that Starbucks should have offered her a tray. Starbucks paid her £75,000 ($90,000). The notion that people congregate here to find a way to sue somebody over an imagined illness is laughable, not least because we do not have evidence providing a causative link, so no substantive lawsuit can currently go ahead.

Again the baseless allegation is made that pfs is sexual side effects induced by diabetes and aggravated by finasteride. Again, it is implied that people with preexisiting neuroticism are inducing their own symptoms through anxiously reading about side effects.

Exhibit 3:

“Post-Finasteride Syndrome: An Induced Delusional Disorder with the Potential of a Mass Psychogenic Illness?”

Exhibit 4:

I’ll reproduce here various comments taken from recent threads on the hairlosstalk forum:

As you can see, with many people, the notion that pfs is a psychosomatic illness is deeply embedded.

With this in mind, it is somewhat troubling to see some pfs patients here ponder whether some symptoms are psychosomatic. By all means, speak for yourself if you think part of your condition may be in part psychogenic. Much in the same way users are encouraged to preface any post which proclaims a theory for why pfs is occurring with “In my opinion”, it is probably best if you write “in my case” if you suspect a psychological factor behind a given symptom. I will speak for myself here and state it unequivocally and without doubt: there is absolutely no psychogenic component to my symptomology whatsoever. So abrupt, forceful and devastating has this syndrome been that I have never once questioned whether I may have imagined it in part or in whole. It is an entirely organic and physiological disease which has wrought damage to my brain and my body. I was a normal, very healthy, athletic, socially well adapted 32 year old man before I took finasteride. I did not and do not have diabetes or a “background of a histrionic personality disorder”.


PFS definitely isn’t a psychosomatic illness but this perception has been around for over a decade. Part of the problem is that there are more than a few anxious guys that fall prone to the nocebo effect and it reflects very poorly on the rest of us. Some of the guys who do have PFS don’t communicate effectively with PFS skeptics/deniers so that also causes issues since they are not believable.

I have somewhat made peace with this and the best thing to do is not let it get to you and if you do feel like engaging keep your cool. It isn’t personal when they don’t believe you, they are sometimes just afraid to admit they are exposing themselves to an ongoing risk so they deny it to maintain a more pleasant reality.

4 Likes Here’s another video of the hair surgeon who has the comments disabled on the video above, this one however is not disabled and you can comment on it, I’m interested in seeing how fast he deletes the comments lol

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There are people who believe men and women don’t exist, it’s a social construct and you can choose your gender whenever you want.

Others believe the earth is flat. It’s more people than you would think.

One of my friend believes we live in a computer simulation and the smallest particle is a byte, and it’s shaped like a cube.

So i’ll add to the list there are people who think pfs is psychosomatic. I don’t see anything shocking there unless you insist that people don’t get to choose what they want to believe in and you want to impose your views on them. In my opinion, those people are wrong and they have the right to be. Society is getting more totalitarian. George Orwell though police is soon to happen. I fear for the future.

I understand you want to bring attention to this disease in the hope to get funds for research but in my opinion, we live in a matriarchal society, pfs affects mostly men and prostate cancer, which affects more men than pfs, is 10 times less funded than breast cancer although it has higher mortality rates and similar occurrence. See, I’m sure there’ ll be plenty of people who would be shocked by the proposition that our society is matriarchal, despite all the evidence. That’s the way it goes. I don’t understand why people want to homogenize all though: no diversity of opinions.

If you want to convince people pfs is a disease when they believe it’s psychosomatic, well, make it your purpose and go get them. For my part, I think it’s better to continue our trials and errors until we find a cure.

And of course I agree pfs is a disease. No doubt in my mind. Nonetheless, I was slightly dyslexic before and now it’s 5 times worst (although getting better) so it does exacerbate some pre-existing conditions.
(and yes, dyslexia is in my head. it’s certainly not in my foot. That doesn’t mean it’s not a real condition)


On second though, never mind my previous post. If you think it’s important, who am I to argue against that.
I respect your point of view and I encourage you to do what’s right. My own point of view is just one among many, and not so important at all.

I wish you all to be relieved from this plague that came upon us.


I agree

Hair loss forum invective doesn’t bother me, I actually laugh at some of their posts. Much of their forum swirls round and round over whether pfs is real or not and it causes a lot of angst; this is very easy for me (and you and everyone else here I’m sure) in that I know it exists. What I find more egregious is hair transplant surgeons spouting believable lies that sound credible to a casual observer in order to disarm any reasonable reservations they may have about the drug before taking it. That the Trueb paper (a single patient case study; disparages existing pfs science) could be peer reviewed and published in 2019 is similarly alarming. What really prompted me to start this thread was some posts I’ve read here recently. I will refrain from quoting them here as I’d rather not serve collective posts up on a plate that ponder whether many of the symptoms here are psychosomatic. In posting this thread, I wanted to bring it to the forefront of everyone’s mind that there are those who seek to discredit, to disparage, to smear and to misrepresent us and our condition. They keep an eye on what’s written here. With this in mind, I just think it’s good practise to be highly cautious before you make a post pondering out loud whether this or that symptom is psychogenic or sweeping statements about the “sort of person” we are based on using finasteride.

Also, I’m highly skeptical of threads like these I have a general theory, please Answer my short survey!
in which the questions look as though they were specifically designed by a hair loss forum skeptic/Merck lawyer/hair transplant surgeon to elicit exactly the sort of responses that would then be used to discredit those posting them. People need to be smart and aware that there are those who have a highly vested interest in having us viewed as psychologically unstable neurotics who are imagining our symptoms or had preexisting health conditions.

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Gracefully put together ozeph

It’s amazing how well the lies being spread about pfs paralell those being spread about Accutane.

“Those (mainly teens and early 20s) people all had underlying health issues anyways.”

“Acne = poor health”

“Reading about horror stories causes these side effects.”

“All these people suing over IBD are just looking to make quick money in this litigious culture.”

Kevin Mannlet’s “these bro’s probably don’t even lift”, as if that is a requirement lest your health be destroyed, takes the cake.

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I took Accutane and Propecia years before anyone knew about the side effects or the post-discontinuation syndromes (aside from whatever came on the leaflet along with the prescription). There was no nocebo effect for those of us who took Propecia in the first few years it was out on the market, like me. I was disbelieved and given all sorts of antidepressants, antianxiety meds, and years of psychotherapy, which in the end did not improve or take away my PFS/PIsoS.

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